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qannie47

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  1. Like
    qannie47 got a reaction from JuliaFaith in At the risk that you may all think me a zealot.....   
    Someone Pm'd me today regarding my reply to t.anna's post. I was asked how why I think something good could possible come from our struggles. Because I feel so strongly about these feelings, I wanted to share a bit of my personal story with all of you. Here was my pm reply.
     
    Well, first, just today, when I was sitting in my car waiting for my kids to get out of school, I watched some younger kids frolicking in the snow with carefree smiles....acting just like the 5 year olds that they were. Yes, I always become contemplative and a bit envious when I look at their parents and I think, "you have no idea how lucky you have it...". I think that is natural to feel that way.
     
    However, staying in that moment offers nothing to me. It just breeds resentment, so I try to move past it.
     
    Second. I truly do believe that something great can become of this. I remember when I was 20 yrs. old and I was overcome by a paralyzing depression that lasted for 10 years. I don't remember one day of relief in those 10 years. I used to pray for God to just take me. I also remember watching my parents have to watch their daughter suffer, and I remember that this caused a level of suffering for them that I now know only a parent can feel.
     
    After 10 years, I found a way out of my depression. It stole 10 years of my life. I could have been bitter, I could have chosen to morn what I had lost. Friends, laughter, spontaneity, etc....
     
    But as I healed, I realized that my depression had served me quite well. In losing, I learned to truly appreciate what had been taken from me. That was 20,years ago. Till this day, there is not a day that I don't wake up and I am thrilled that I can feel joy. Depression gave me a perspective on life that I truly feel that I would not otherwise have. It takes ALOT to get me truly down, and very little to make me happy. It in fact taught me what is most important in life, and I feel that I am a happier, more grounded person because of it. Beating depression has left me with an inner strength that nothing can take from me. Had I not suffered so much, and grown from it, I am not sure if I would be the person I am today who can wake up every morning and have faith that everything is going to be okay.
     
    So what on earth could Pandas have to offer me and my children that could be good is what you ask? For one, it will leave you and your child very well equipped to deal with every day life struggles that to them and yourself...will feel like a cakewalk. Just think, when all of you are finally past this, everyday, when you can wake up without worrying about Pandas...a simple thing like a quiet house will put a smile on your face and warm your heart. In the future, when all is well, and sit back and listen to your child laugh on the phone, make plans with friends, graduate from college....these things, that so many parents can just expect to happen, will feel miraculous to you. These people, who appear to be so lucky right now, will they ever feel the joy that one day you will feel? Will they ever appreciate life and the simple things it has to offer the way the parents in this forum will one day appreciate and hold so sacred?
     
    Yes, I do believe much positive can come from negative. I see my ds having struggled so much.. He has been hurt in so many ways by this. I have to believe that while so many days/moments have been so difficult for him that what we don't see that for every day the battle is fought, an inner strength is building, resilliance is forming. I see so many entitled adult/kids who are week because life was so easy. Imagine your child, and what he will take with him into the rest of his life when he/she has conquered this. Empathy, compassion, inner strength, fortitude, self confidence. Many children/adults lack these qualities. Our greatest leaders and Teachers most often come from difficult circumstances.
     
    So yes, in a backward's way, I do feel that Panda's, Pans, etc...is a gift. Maybe it does not feel like one right now, but perhaps we will one day be able to contemplate and be thankful for what it did teach us.
     
     
  2. Like
    qannie47 got a reaction from JuliaFaith in At the risk that you may all think me a zealot.....   
    Yes. Just yesterday I took my 8 year old twins sledding. For their b'day I bought them 2 new sleds that took the form of snowmobiles. (awesome). They are quite sturdy and probable weigh 8 lbs. Watching them I was reminded again of their greatness...and how much they had emotionally grown.
     
    My B (non-pandas), suffered years of internal anguish at the thought of putting a shirt on his hyper-sensitive body. Taking a shower and having to let water run down his face and body was almost too much to bear. His fingernails drove him crazy because he could feel the whites make contact with everything so he often ripped them off down to the quick, which inevitably caused him more pain. Loud sounds, learning to read in a very busy classroom? UGH.
     
    My B has conquered and is well past most of his sensory issues. Yesterday I saw how those troubled days have served him so well. While other kids were crying and moaning about the difficulty of dragging a sled up the hill or a wipe out. B was not crying or moaning. He was thriving. I watched him drag a sled that was probably to heavy for him up the hill over and over again. I saw him fall, get up, and fall again without missing a beat. He was exhibiting emotional regulation, perseverance, and embracing the moment with such joy! I truly feel that B already has begun to have a working understanding of prioritizing life's challenges, and delegating what kind of emotional energy he is willing to invest. When one has had to deal with the fact that the appearance of a shirt can cripple one's self....what's the big deal about a little uphill grunt work and a couple of bumps on a cold snowy hill....
     
    Both my kids are "can do" kids. They are tough as nails and have the ability to shine in ways that their peers their own age have not yet experienced. I see these traits emerging more and more in small, but big ways. While they both still have bumps in their days/roads, it has been said to me more then once by teachers, adults, etc....."Your children are going to make wonderful adults, you are not going to have to worry about them".
     
    I personally feel it is there early life struggle's that they will have that to thank for.
  3. Like
    qannie47 got a reaction from cobbiemommy in At the risk that you may all think me a zealot.....   
    Someone Pm'd me today regarding my reply to t.anna's post. I was asked how why I think something good could possible come from our struggles. Because I feel so strongly about these feelings, I wanted to share a bit of my personal story with all of you. Here was my pm reply.
     
    Well, first, just today, when I was sitting in my car waiting for my kids to get out of school, I watched some younger kids frolicking in the snow with carefree smiles....acting just like the 5 year olds that they were. Yes, I always become contemplative and a bit envious when I look at their parents and I think, "you have no idea how lucky you have it...". I think that is natural to feel that way.
     
    However, staying in that moment offers nothing to me. It just breeds resentment, so I try to move past it.
     
    Second. I truly do believe that something great can become of this. I remember when I was 20 yrs. old and I was overcome by a paralyzing depression that lasted for 10 years. I don't remember one day of relief in those 10 years. I used to pray for God to just take me. I also remember watching my parents have to watch their daughter suffer, and I remember that this caused a level of suffering for them that I now know only a parent can feel.
     
    After 10 years, I found a way out of my depression. It stole 10 years of my life. I could have been bitter, I could have chosen to morn what I had lost. Friends, laughter, spontaneity, etc....
     
    But as I healed, I realized that my depression had served me quite well. In losing, I learned to truly appreciate what had been taken from me. That was 20,years ago. Till this day, there is not a day that I don't wake up and I am thrilled that I can feel joy. Depression gave me a perspective on life that I truly feel that I would not otherwise have. It takes ALOT to get me truly down, and very little to make me happy. It in fact taught me what is most important in life, and I feel that I am a happier, more grounded person because of it. Beating depression has left me with an inner strength that nothing can take from me. Had I not suffered so much, and grown from it, I am not sure if I would be the person I am today who can wake up every morning and have faith that everything is going to be okay.
     
    So what on earth could Pandas have to offer me and my children that could be good is what you ask? For one, it will leave you and your child very well equipped to deal with every day life struggles that to them and yourself...will feel like a cakewalk. Just think, when all of you are finally past this, everyday, when you can wake up without worrying about Pandas...a simple thing like a quiet house will put a smile on your face and warm your heart. In the future, when all is well, and sit back and listen to your child laugh on the phone, make plans with friends, graduate from college....these things, that so many parents can just expect to happen, will feel miraculous to you. These people, who appear to be so lucky right now, will they ever feel the joy that one day you will feel? Will they ever appreciate life and the simple things it has to offer the way the parents in this forum will one day appreciate and hold so sacred?
     
    Yes, I do believe much positive can come from negative. I see my ds having struggled so much.. He has been hurt in so many ways by this. I have to believe that while so many days/moments have been so difficult for him that what we don't see that for every day the battle is fought, an inner strength is building, resilliance is forming. I see so many entitled adult/kids who are week because life was so easy. Imagine your child, and what he will take with him into the rest of his life when he/she has conquered this. Empathy, compassion, inner strength, fortitude, self confidence. Many children/adults lack these qualities. Our greatest leaders and Teachers most often come from difficult circumstances.
     
    So yes, in a backward's way, I do feel that Panda's, Pans, etc...is a gift. Maybe it does not feel like one right now, but perhaps we will one day be able to contemplate and be thankful for what it did teach us.
     
     
  4. Like
    qannie47 got a reaction from blakes_mom in At the risk that you may all think me a zealot.....   
    Someone Pm'd me today regarding my reply to t.anna's post. I was asked how why I think something good could possible come from our struggles. Because I feel so strongly about these feelings, I wanted to share a bit of my personal story with all of you. Here was my pm reply.
     
    Well, first, just today, when I was sitting in my car waiting for my kids to get out of school, I watched some younger kids frolicking in the snow with carefree smiles....acting just like the 5 year olds that they were. Yes, I always become contemplative and a bit envious when I look at their parents and I think, "you have no idea how lucky you have it...". I think that is natural to feel that way.
     
    However, staying in that moment offers nothing to me. It just breeds resentment, so I try to move past it.
     
    Second. I truly do believe that something great can become of this. I remember when I was 20 yrs. old and I was overcome by a paralyzing depression that lasted for 10 years. I don't remember one day of relief in those 10 years. I used to pray for God to just take me. I also remember watching my parents have to watch their daughter suffer, and I remember that this caused a level of suffering for them that I now know only a parent can feel.
     
    After 10 years, I found a way out of my depression. It stole 10 years of my life. I could have been bitter, I could have chosen to morn what I had lost. Friends, laughter, spontaneity, etc....
     
    But as I healed, I realized that my depression had served me quite well. In losing, I learned to truly appreciate what had been taken from me. That was 20,years ago. Till this day, there is not a day that I don't wake up and I am thrilled that I can feel joy. Depression gave me a perspective on life that I truly feel that I would not otherwise have. It takes ALOT to get me truly down, and very little to make me happy. It in fact taught me what is most important in life, and I feel that I am a happier, more grounded person because of it. Beating depression has left me with an inner strength that nothing can take from me. Had I not suffered so much, and grown from it, I am not sure if I would be the person I am today who can wake up every morning and have faith that everything is going to be okay.
     
    So what on earth could Pandas have to offer me and my children that could be good is what you ask? For one, it will leave you and your child very well equipped to deal with every day life struggles that to them and yourself...will feel like a cakewalk. Just think, when all of you are finally past this, everyday, when you can wake up without worrying about Pandas...a simple thing like a quiet house will put a smile on your face and warm your heart. In the future, when all is well, and sit back and listen to your child laugh on the phone, make plans with friends, graduate from college....these things, that so many parents can just expect to happen, will feel miraculous to you. These people, who appear to be so lucky right now, will they ever feel the joy that one day you will feel? Will they ever appreciate life and the simple things it has to offer the way the parents in this forum will one day appreciate and hold so sacred?
     
    Yes, I do believe much positive can come from negative. I see my ds having struggled so much.. He has been hurt in so many ways by this. I have to believe that while so many days/moments have been so difficult for him that what we don't see that for every day the battle is fought, an inner strength is building, resilliance is forming. I see so many entitled adult/kids who are week because life was so easy. Imagine your child, and what he will take with him into the rest of his life when he/she has conquered this. Empathy, compassion, inner strength, fortitude, self confidence. Many children/adults lack these qualities. Our greatest leaders and Teachers most often come from difficult circumstances.
     
    So yes, in a backward's way, I do feel that Panda's, Pans, etc...is a gift. Maybe it does not feel like one right now, but perhaps we will one day be able to contemplate and be thankful for what it did teach us.
     
     
  5. Like
    qannie47 got a reaction from kimballot in Doctors perhaps are seeing the light.   
    Today, my ds and I saw an ENT doc to schedule a tonsillectomy. I was dreading it a bit, because of course, I was going to have to bring up Pandas, and I did not relish the whole "deer in the headlight", glazed eyeball stare...
     
    Guess what? I did not experience that at all! While this doc expressed that she had not yet had a patient with this diagnosis, she was clearly open minded, on board, and willing to help.
     
    She said that she was going to talk to Dr. K, our Peds doc and collaborate to make sure that my ds had the best outcome possible with minimal complications...
     
    I think that this speaks to the fact that doctors are finally looking/thinking outside of the box and embracing new science...
  6. Like
    qannie47 got a reaction from JoyBop in Question from a Newbie   
    Have you done another rapid strep test? Certainly your doc is willing to do that. It took 30 days of abx to wipe out infection. Also, there is a wax/wane pattern that emerges as kids are healing. One day good, one day bad, one day with 2 hours symptoms, etc...What you should see though is a continued progressive movement forward during the healing phase which can last several weeks to fully recover. If your child is less then 70% consistently better, then I would say more rounds of abx. The roller coaster ride of two steps forward, one step back is in my opinion the hardest part of this disorder to get used to. Get the rapid strep for sure.
  7. Like
    qannie47 reacted to PowPow in Can PEX help if IVIG didn't?   
    I did not say that one should not test for offending infections. In fact, I believe that is crucial. I also did not profess that a response can be determined strictly from pex.
     
    There is a huge tendency to presume (and based on much advice from these forums) that Lyme is a factor in many or even every child's PANS symptoms. It may be. However, many, many children have negative Lyme test after negative test. Some blood, some CSF, some urine. If it is negative, perhaps the focus, instead of finding a practicitioner to "find" Lyme or mold, or gluten or whatever the potential offending agent may be, would be to address the faulty immune response.
     
    I would not encourage a parent to ignore an infectious trigger, but I do speak from much experience with several children affected, severely, and having had nearly every treatment given for this disorder (including Lyme treatment)~ that if proven accurate Lyme tests are negative, one should go with what works. If that is pulsing Lyme antibiotics, high dose steroids, or having someone wave a magic stick over your kid and proclaiming them healed from what ails them, then do it.
     
    There is a huge amount of undeserved anxiety put into nearly every parent on this forum regarding Lyme. Parents whose children are severely ill are terrified to give their children steroids "because someone the forum told me it is so bad for Lyme".
     
    Children are being undertreated- as their parents are afraid to try the steroids their PANS docs give them, because these parents have been coached to believe that, no matter how many Lyme tests they take~~ you never can be sure about false negatives!
     
    If a suffering child has PANS (which I will be happy to define shortly- though I imagine you meant that tongue-in-cheek and do not really want a definition from me); has pex and recovers, only to relapse; it does not mean that there has to be Lyme or a co-infection invovlved.That is all I was pointing out.
     
    I am very happy for those who have discovered that Lyme treatment brings their children back. I am very happy for those who "peel an onion" (excellent analogy, llm!) and get their kids back. I am so pleased to read about qannie, Ophelia, surfmom and others who have found a diagnosable autoimmune illness that can be treated and restore quality of life for themselves and their children.
    My heart just breaks for those who pursue autoimmune treatment, see it work, even if only temporarily and drop it, in favor of basing questionable treatment on even more questionable results. It happens far too frequently.
     
    I will be happy to share "my" definition of PANS and PANDAS, though it can be found, in summary, on the NIMH website :
     
    http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-and-pans.shtml
     
    I hope all realize this response is respectfully submitted, with much appreciation for the parents on this forum, who all have the same desire to bring our suffering children back from the brink of PANS.
  8. Like
    qannie47 got a reaction from thirteen in New Member feeling so alone   
    Hi. I am so sorry for your experience. Unfortunately, it is not uncommon. Don't give up!!! We see Dr. K, out of Hinsdale, (you can look up his full name in above threads at top of forum). I heard that he will do phone consults, and I know he treats long distance. I am just not sure what that means....I would call him. Everybody has a favorite doc on this forum, but I think the ones listed here all bring something important to the table and it will put you on the right track. Best of luck. If you have any other questions, PM me. I will talk to you on phone if you would like....
  9. Like
    qannie47 got a reaction from JoyBop in Really Confused   
    This should clear things up with titers.....http://www.latitudes...?showtopic=3756
  10. Like
    qannie47 reacted to pr40 in better!   
    there are not enough posts about improvement. here is one. Today we are much, much better than we were a year ago. We are not out of the woods yet and life is still difficult but it does not seem hopeless as it used to.
    here is what we did:
    1) abx, for a year now. Augmentin and Zitrhomax
    2) gluten free, casin free, sugar free, and then also night-shades free -- not as hard as you'd think if you have basic cooking skills and time
    3) supplements -- many anti-inflamatories, magnesium, zinc, vitamin D. we also expereimented with methylation supplements but I am not sure what worked.
    4) behavior -- there were times when nothing worked. when they are approachable rewards do motivate them as do frequent time outs, time alones, which help them calm down and regroup.
    5) total dedication to them by both parents. we are older didn't mind much not being able to do anything other than high maintenance for the kids.
    6) reading this forum. it calms me down and, of course, this is where I find my best advice.
    thank you all
     
  11. Like
    qannie47 got a reaction from Teri in I feel like we won the Lottery.   
    The lumbar puncture results are in....It is autoimmune.....which means.....our doctor is writing a letter to our insurance company supporting an autoimmune diagnosis.......and they have to reimburse us 9K or 70% of it anyway because the FDA approved treatment for this is.....what do you know....IVIG.
     
    All future IVIG will be covered.
     
    MY DS STILL DOING WELL. IN FACT GREAT. RECEIEVED AN EMAIL FROM TEACHER REPORTING HIS BEST DAY YET. 100% SHE IS AMAZED. PRINCIPAL AS WELL NOTES THE REMARKABLE DIFFERENCE IN HIM OVER THE PAST TWO WEEKS SINCE HE HAS MOVED OUT OF HIS RECENT, HORRBILE, THREE WEEK EPISODE.
     
    YEA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
  12. Like
    qannie47 got a reaction from TinyTreasures in I feel like we won the Lottery.   
    The lumbar puncture results are in....It is autoimmune.....which means.....our doctor is writing a letter to our insurance company supporting an autoimmune diagnosis.......and they have to reimburse us 9K or 70% of it anyway because the FDA approved treatment for this is.....what do you know....IVIG.
     
    All future IVIG will be covered.
     
    MY DS STILL DOING WELL. IN FACT GREAT. RECEIEVED AN EMAIL FROM TEACHER REPORTING HIS BEST DAY YET. 100% SHE IS AMAZED. PRINCIPAL AS WELL NOTES THE REMARKABLE DIFFERENCE IN HIM OVER THE PAST TWO WEEKS SINCE HE HAS MOVED OUT OF HIS RECENT, HORRBILE, THREE WEEK EPISODE.
     
    YEA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
  13. Like
    qannie47 got a reaction from Vbakersimon in I feel like we won the Lottery.   
    The lumbar puncture results are in....It is autoimmune.....which means.....our doctor is writing a letter to our insurance company supporting an autoimmune diagnosis.......and they have to reimburse us 9K or 70% of it anyway because the FDA approved treatment for this is.....what do you know....IVIG.
     
    All future IVIG will be covered.
     
    MY DS STILL DOING WELL. IN FACT GREAT. RECEIEVED AN EMAIL FROM TEACHER REPORTING HIS BEST DAY YET. 100% SHE IS AMAZED. PRINCIPAL AS WELL NOTES THE REMARKABLE DIFFERENCE IN HIM OVER THE PAST TWO WEEKS SINCE HE HAS MOVED OUT OF HIS RECENT, HORRBILE, THREE WEEK EPISODE.
     
    YEA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
  14. Like
    qannie47 got a reaction from tu4four in Family explosion   
    I know this is the last thing you want to hear...but I use the BEST behavior mod program out there. It works well for kids who are chronically sick, and keeps everybody else sane as well. I don't know what I would do without it. Howard Glaser, The Nurtured Heart Approach. It will help. Not make everything perfect, but it will see you through everyday. I've tried them all.
  15. Like
    qannie47 got a reaction from Connie in Family explosion   
    I know this is the last thing you want to hear...but I use the BEST behavior mod program out there. It works well for kids who are chronically sick, and keeps everybody else sane as well. I don't know what I would do without it. Howard Glaser, The Nurtured Heart Approach. It will help. Not make everything perfect, but it will see you through everyday. I've tried them all.
  16. Like
    qannie47 reacted to pr40 in Failing marriage   
    here is a theory based on my wife's behavior. She went through a denial for a year, then when she could not deny it anylonger she switched to saying "it is not that bad." But, in our case, I think that there is something wrong with my wife, too. She has high IGG lyme markers and some of the same behavioral issues as our children. She wasn't like that the first 15 years of our marriage.
     
    If I have an advice to give, it is this: you got to approach your spouse the way you do your chidlren. I don't mean as you would an infant, but as you woudl a person who needs some kind of help. Your spouse may need help in realizing what is going on or he might need more help than that. Or he may not want to be helped. I was lucky that in some way my wife realized that something was wrong with her and tried very hard to figure it out.
  17. Like
    qannie47 got a reaction from ScaredMommy in On a positive note....   
    My ds has now had 3 good days of school. I am seeing increasing improvement of symptoms. 90% DAY! Tonight, when I got home from work, I was greeted by a child who had a smile on his face and a sweet lilt to his voice that over the last month I wasn't sure if I would ever hear again. As I tucked him into bed, he sang a song to himself, "I am Happy Happy Happy". Music to my ears....
  18. Like
    qannie47 got a reaction from Mommy2MCL in On a positive note....   
    My ds has now had 3 good days of school. I am seeing increasing improvement of symptoms. 90% DAY! Tonight, when I got home from work, I was greeted by a child who had a smile on his face and a sweet lilt to his voice that over the last month I wasn't sure if I would ever hear again. As I tucked him into bed, he sang a song to himself, "I am Happy Happy Happy". Music to my ears....
  19. Like
    qannie47 got a reaction from cobbiemommy in Back from Children's Memorial...test results.   
    My ds's doctor from children's called today to see what our end result was...Thank God For HIM. He disagreed with what they said, pretty much in it's entirety...He also said he still agrees that we are dealing with Pandas and he thinks that we should stay on course with treatment with Dr. K...He said that if he were in my shoes, that is what he would do...it is so nice to see a doctor who is humble enough to admit that he does not know everything and is willing to think out of the box.....when I shared the diagnosis, and quoted what the doctor said, he used terms like "that is utterly untrue", and , "I don't think you missed anything, as a mother you have been on top of everything, so I don't agree with that".
  20. Like
    qannie47 got a reaction from T_Mom in Everybody should read this....   
    What I find Ironic is that I just read about this for the first time when I decided to post the link....and the very neurologist that my ds's peds doc called for a consult actually has done research on this very same disorder. So, It will indeed be very interesting to see what direction he goes in with my son. He already stated to our peds doc that he thinks that this is autoimmune based.....
  21. Like
    qannie47 got a reaction from T_Anna in Everybody should read this....   
    I agree, this 4% even if it is that low is still 4% and that includes real people, real children whom are suffering. I can't tell you how many times I have fit into the 2% category....my point being, percentages should never figure into the equation when it comes to the decision of To test or not to test. EAMom, I agree whole heartedly with what you said. How many undiagnosed cases could there be out there? Another article hypothesized, about the many people sitting in psychiatric facilities that could have this disorder. As far as I am concerned, it could be .01%, if the symptoms have a possible fit, test.
  22. Like
    qannie47 got a reaction from lovemylittleguy in MTHFR...a great link   
    http://www.easytolovebut.com/?p=2782 I thought this was a great article on MTHFT. For those of us whom are not very well versed.....and even for those of you who are, I think you will appreciate this.
  23. Like
    qannie47 reacted to Mayzoo in My Chrio..found this..treating my DS   
    The average milk kefir does have Streptococcus thermophilus. Not all kefirs have the same bacterias and yeasts, but here is a general guide of the common ingredients found in milk kefir made from healthy grains:
     
    Bacteria
    Lactobacillus acidophilus
    Lactobacillus brevis
    Lactobacillus casei
    Lactobacillus delbrueckii subsp. bulgaricus
    Lactobacillus delbrueckii subsp. delbrueckii
    Lactobacillus delbrueckii subsp. lactis
    Lactobacillus helveticus
    Lactobacillus kefiranofaciens subsp. kefiranofaciens
    Lactobacillus kefiri
    Lactobacillus paracasei subsp. paracasei
    Lactobacillus plantarum
    Lactobacillus rhamnosus
    Lactobacillus sake
    Lactococcus lactis subsp. cremoris
    Lactococcus lactis subsp. lactis
    Lactococcus lactis
    Leuconostoc mesenteroides subsp. cremoris
    Leuconostoc mesenteroides subsp. dextranicum
    Leuconostoc mesenteroides subsp. mesenteroides
    Pseudomonas
    Pseudomonas fluorescens
    Pseudomonas putida
    Streptococcus thermophilus

    Yeasts
    Chamaerops humilis
    Kazachstania unispora
    Kazachstania exigua
    Kazachstania exigua
    Kluyveromyces siamensis
    Kluyveromyces lactis
    Kluyveromyces marxianus
    Saccharomyces cerevisiae
    Saccharomyces martiniae
    Saccharomyces unisporus
     
    http://www.culturesforhealth.com/milk-kefir-grains-composition-bacteria-yeast/#
  24. Like
    qannie47 reacted to LNN in Meeting with School Counselor & Teacher to begin 504 Process - see   
    I've never looked at a 504 as a discrimination issue. It allows for accommodations (which I learned is a word with legal ramifications) in the classroom and curriculum. the 504 still holds a child responsible for learning the same material as peers. But we've used it for 1. validate our son's illness in the eyes of skeptical or unaware teachers and 2. a way to reduce homework demands when needed. I initially feel into the trap of trying to educate about Pandas (before we had a 504 and after), but I now only focus on getting my child what he needs to make it successfully thru the year.
     
    For tics, we wrote in that our son be allowed to take unlimited bathroom breaks as a way to relieve stress and go outside the classroom to have a tic-fest unseen. This also helped with urinary urgency. This was an important accommodation, since some teachers wanted to limit him in fear he was using it to avoid work or was going to miss instructions (had to make them see that if he was obsessed with having to pee, he wasn't listening to them anyway). Some teachers also allowed him to move his seat to a private desk in a quiet part of the room when they were silent reading and he might be humming or be easily distracted.
     
    We wrote in that he could have a water bottle at his desk to avoid the use of water fountains.
    He could take extra days in completing homework if needed or do only half the math problems if he showed comprehension
    He could dictate writing assignments to me and I'd type them when handwriting was too difficult.
    He would not be marked down or made to re-write something due to poor handwriting
    If he tested poorly, his teachers were asked to test verbally and if he could demonstrate understanding, adjust his grade upward to match his comprehension, not solely his written output.
    He was given seating preference keeping him away from doors or areas of "traffic" where he'd be more distracted. He's generally seated in front or among girls to reduce distractions (even he admits this helps a lot).
    Teachers are asked to check in with him frequently for comprehension to make sure he doesn't get so lost that he has no clue.
    No timed tests.
     
    As for not "getting it" - they may never, or they may grow as they work with your child and see the sawtooth changes first hand. You can't get it until you see it, IMO. But it's not their job to get it. It's their job to deliver new material in a way your child can process and adopt it. Sure, it may help them with future kids. But I've stopped worrying about how they view OCD. They just need to accommodate it. His teachers have asked "how will we know when he's in a flare and when we should hold him to the same standards as everyone else?" There are of course signs you'll see - handwriting, impulsivity, temper, etc. But what may be an increase in symptoms for your child may still fall within the bell curve of "normal" for the class. Lots of boys are hyper. How does a teacher know in October whether the bouncing around my kid is doing is normal for him or an increase? She doesn't. So I've told them "when you realize at the end of the day that you've said my son's name 100 times today and none of it was in a good way, call me." This has been far more helpful to them than my trying to educate them on OCD, tics, et al. But we've used a 504 for 4 years now and it's been helpful.
  25. Like
    qannie47 reacted to MomWithOCDSon in Anyone know where Dr. T is?   
    Ophelia, Qannie and others --
     
    I can only speak for myself; I was never offended. I do truly empathize with everyone here who's had trouble getting treatment, who's had trouble feeling as though ANY doctor "gets it" or cares or has the time and resources to care "enough." This PANDAS/PANS thing stinks, and the scarcity of caregivers only exacerbates the problem.
     
    And I don't condone doctors who are unresponsive, unreachable, hopelessly disorganized, employ unprofessional staff, etc., either. But I guess I vote with my feet, as it were, and I'm usually pretty vocal (if you can imagine ;-) ) with the actual office, as well. I feel as though that's a better "bang for my buck" in the end.
     
    I don't want to "silence" anyone, and I'm not suggesting that providers with deficits should not be identified, either. But if we do it one-on-one, via PM and the like, there's less opportunity for "information" to morph into the realm of "gossip" or "venting," and personal experiences and impressions of a handful of unhappy people to "outshout" the other handful -- or potentially more -- whose experiences were far more positive. Again, despite the issues, this doctor and others who've faced their own share of criticisms have, in fact, helped many, many people, but those families are not necessarily active on the forum any longer. So we wind up with what I think is a somewhat "unbalanced" representation in the end.
     
    So I like tpotter's post/PM methodology. :-)
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